Any Orlando, Florida MDS patients?

[MotherSquid]

Hello to all- this is my 1st post to this forum, looking forward to exploring the site. I have been receiving Infed for anemia since 2010, and was diagnosed with MDS last year. My doctor has added Procrit MDS to my treatment, but my labs have gotten worse. Last week I got 6 units of blood, and have had 3 transfusions a year since 2010, as well. I am disappointed that after 4+ years of Infed & a year of Procrit, I'm at my lowest point, with Hgb in the 4s & Ferritin 'less than 3'. I have insurance & have paid many thousands of dollars, so I'd hope for some progress. My tests for internal blood loss have been negative, but there's no investigation into what happens to my transfused blood & iron. They just keep pumping more blood & more drugs into a broken system, but I'd like to get repaired if possible. At least tell me what's happening. I'm getting tired of spending so much time & $ @ cancer center!

[Neil Cuadra]

There is now an Orlando Community of Hope Support Group, with an meeting coming up this month.

[White-Stone]

Just found out things were not rosy, yesterday.

Platlets were 1 million. That's all I was told. I was the last patient and they were anxious to get home, I think.

I am scheduled for a Bone Marrow thing. Kind of anxious about that. No mention of sedative, just inject to numb the skin at the site. Think I would like a Diazepam or two.

Also, was told of breast cancer - both sides. I seem to be in for a bumpy ride.

No meds yet, except BP and pain meds.

Oh, I am a 72 year old woman.

Talk more later.